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AbaseSouth Africa abanakekelayo
ILANGA lasebusika laliphumile ngesikhathi uMuxe Nkuna oneminyaka engu-13 egibela ibhanoyi okokuqala ngqa empilweni yakhe elibhekise eGauteng ngethemba lokuguqula impilo yakhe.
Namanje ithemba akakalilahli . . .
Odokotela basePretoria Academic Hospital bathola ukuthi impilo kaMuxe ingaba sengozini uma ehlinzwa isigaxa esisedolweni lakhe esesikhule salingana nekhabe.
Isifo esimphethe sibizwa nge-neurofibromatosis, kanti senza kuqaqambe kumile izigaxa ezincane kuma-cells emithambo. Lezi zigaxa zibonakala ngaphansi kwesikhumba, kodwa zingamila noma kuphi emzimbeni.
"Odokotela bathi lesi sifo esimphethe sesisabalale saze safika emgogodleni wakhe. Ukuhlinzwa kungamshiya ekhubazekile noma efile," kusho uSamki Phenyane usomabhizinisi owafunda ngosizi lukaMuxe ephephandabeni wathatha isinqumo sokumsiza. Wakhipha imali yokuthenga imithi yokudambisa izinhlungu kwehliswe nezinga lokukhula kwesigaxa.
UMuxe uhlala eCalcutta esifundeni saseBushbuckridge eningizimu yeLimpopo. Ukuhamba kwakhe efuna usizo kule nkinga yakhe kwenze wabona ukuthi abantu banobubele kangakanani. Odokotela baseNelspruit Medi-Clinic abafunanga ukukhokhelwa ngomsebenzi wabo ngesikhathi bethola ukuthi uSamki uyena osiza lesi siguli.
"Nginezingane ezintathu - intombazane nabafana ababili, zonke zineminyaka engaphansi kweyisishiyagalombili - ngakhoke ngathinteka uma ngibona isithombe sikaMuxe ephephandabeni," kusho uSamki.
"Ngithemba ukuthi okuncane engikwenzayo kuzowenza umehluko," kuqhuba yena.
"Luningi ucwaningo olwenziwa ngenxa yesimo sikaMuxe," kusho uDr Doron Frantzen osePretoria Academic Hospital ophethe udaba lukaMuxe nosexhumane nozakwabo abaseMelika ukuze kusizwe uMuxe.
"Kungenzeka ukuthi kube khona ozoqhamuka nekhambi elizomsiza.
"Ngokolwazi lwethu, ukuhlinzwa kwakhe kuzoba yinselelo enkulu. Isigaxa sakhe sisuka edolweni siye emthanjeni we-hip - osuka edolweni uze ufike emgogodleni.
"Kungenzeka ukuthi kunezinye izigaxa ezihamba ngomthambo kanti ngokuzisusa kungasuka nomthambo unyawo lwakhe lungabe lusasebenza."
Lolu hlobo lwesigaxa lunemithambo yegazi okuthi uma udokotela ezama ukusihlinza, isiguli sophe kakhulu. Abanye balahlekelwa amalitha amathathu kuya kwamane egazi bafe ngenxa yalokho.
"Enye indlela esingamsiza ngayo uMuxe wukunquma umlenze nengxenye yesingezansi," kuchaza uDr Frantzen. "Uma sesikwenzile lokho ngeke ahambe ngendlela ahamba ngayo manje kanti kunengozi yokuthi isigaxa sikhona nasemgogodleni ongeke wawususa."
"Ngisazoqhubeka nocwaningo lwami ukuze kusizwe uMuxe," kusho uSamki. Ngesikhathi sokushicilelwa kwalolu daba, wayezwe ngohlelo olusha oluzanywa eBrazil esazoxhumana noDr Frantzen ukuze babonisane ngalo.
Umama kaMuxe okwadingeka ukuba akhulise izingane zakhe eziyisikhombisa nabazukulu ababili yedwa emva kokushona komyeni wakhe ekuqaleni kwalo nyaka ubabonga kakhulu laba baSamariya abalungileyo abasize yena nendodana yakhe ukuze basiqonde kabanzi lesi sifo.
UMuxe wahlanganisa iminyaka emithathu engakwazi ukuhamba kanti kwaphela izimali abazali bakhe bezama ukumelapha. Babetshelwa ukuthi alukho usizo abangaluthola.
Phezu kwazo zonke lezi zinto, uMuxe uthi ufisa ukuba ngudokotela ngelinye ilanga ukuze asize zonke iziguli.
BONA ZULU - October 2005
indaba nguRIOT HLATSHWAYO noPATRICIA McCRACKEN
izithombe nguZENZELE KUHLASE/AENS
KWESOKUDLA: UMuxe noSamki Phenyane ongusomabhizinisi owamsiza emva kokufunda ngosizi lwakhe ephephandabeni.
Isigaxa esilingana nekhabe
NGENHLA: UMuxe nomama wakhe uMalumane besemtholampilo.
Yize noma kungelula ukuthi ahlinzwe uMuxe Nkuna, usebonile ukuthi kusekhona abanomusa
BONA ZULU - October 2005
'Sonke sisengozini'
I-Neurofibromatosis (NF) yisifo esandile ngokweChildren's Tumor Foundation ezinze eMelika - empeleni iyisifo esijwayele ukuhlasela imithambo esidalwa wufuzo.
I-NF ingahlasela kunoma yimuphi umndeni. Itholakala emhlabeni wonkana, ihlasela abesilisa nabesimame ngokufanayo kanti ayikhethi hlanga noma ndawo.
Zintathu izinhlobo zayo - ngokwe-US Harvard Medical School, umuntu oyedwa kwabangu-3 000 one-NF1, njengoMuxe Nkuna.
Ingxenye yalabo abaneNF1 bayithola kumzali osuke engathelela ingane kalula. Kodwa enye ingxenye ayinabazali abanalesi sifo. Indlela esitholakala ngayo ayifani naleyo okutholakala ngayo i-elephantiasis, ecishe ifane naso kodwa esatshalaliswa yigciwane eliphila ngawe.
Lesi sigaxa asibuhlungu, siba buhlungu uma sishayeka noma uma kuthinteke imithambo njengakuMuxe. Ingane ene-NF1 akufanele ithathiswe okomuntu ogulayo noma osesimweni esibucayi kanti iningi labadala abane-NF1 alibi nazinkinga ngokwempilo, liyashada lenze imisebenzi emihle.
I-NF1 ayinabungozi kodwa ingamkhubaza umuntu, yenze angaboni, angezwa, kuthikamezeke amathambo, abe nezigaxa esikhumbeni, ebuchosheni nasemgogodleni, anqunywe izingalo nemilenze abe nenkinga esikoleni. Abantu abane-NF abavamile ukuba bade njengontanga yabo noma njengamalungu emindeni yabo kanti kungenzeka babe namakhanda amakhudlwana. Ukuba kulesi simo kuyakhathaza kwenze ube nomzwangedwa - uma unaso noma kukhona omaziyo onaso mtshele ajoyine inhlangano yabakhubazekile noma axhumane nalamaWebsites aphesheya:
www.understandingnf1.org
www.nfinc.org
www.ctf.org
Patricia McCracken [z]
